Introduction:
My name is Cindy. I am 56 years old and have been diagnosed with UC for a year and a half. Currently I am symptom free, have one bowel movement per day that is a Bristol 4 or 5. I have read this site from the beginning and have found the information here invaluable. As I read stories of people that are sick, discouraged, and hopeless, it breaks my heart because I know what that feels like…terrible. But there is hope! With proper drugs, nutrition and supplements healing is possible .
Some more about me:
I have always had an interest in nutrition. When diagnosed with this disease, I thought my diet was very good. I ate tons of green leafy veggies, had varied colors on my plate, used mostly legumes and nuts for protein, ate very little sugar, and drank lots of water and green tea. What happened? I don’t know. I am also a believer in exercise…so is Bev-who is a continual source of inspiration.
Symptoms:
I became symptom free in July. I began taking low dose Naltrexone in May, and my belief is that it along with other measures put me into remission.
There Is Hope – Currently I’m Symptom Free
My story begins with the ubiquitous blood in the stool. It was Intermittent leading me to think it was hemorrhoidal, but it persisted, leading me to my first colonoscopy. In my 2 minute diagnosis after the procedure my doctor assured me it was indeed hemorrhoid and to use OTC meds and not to worry.i then received my test results in the mail telling me to continue my Nexium. WELL I did not and would not take Nexium. That should have been my first clue. I did not read through my test results which would have told me I had proctitis Lesson learned: always read your own test results-even if you have to do so with dictionary on hand! A year later because of continued and accelerated bleeding my second colonoscopy revealed Ulcerative Colitis.
My doctor told me that I would be on medication for the rest of my life and it did not matter what I ate.What a load of bull!!! My family joined forces, got on the Internet and researched the heck out of this disease to find “Breaking the Vicious Cycle
” the book that became my guide.
I started SCD and took 2 Lialda daily. Although I improved it was not enough. Enter: Gaps. This regimen begins with invaluable bone broths and evolves your digestive system to the point that you can actually eat all of the foods on SCD. It was like getting a masters degree in UC- not an easy road but SO worth it. During stressful times I had to take 2 very short courses ( two week) of steroids. I would do 10mg first week and 5 second week. I do think it’s best to avoid steroids whenever possible. They are very tempting because they make you feel better for the moment but I believe what Andrew Wiel says about them. He says that use of steroids decreases the likelihood of long term remission.
Medications / Supplements
The only medication that I currently take is low dose Naltrexone. I really believe in it.
When I quit taking Lialda, I weaned myself off of it VERY slowly. Meaning eliminating one pill every four days for 4 weeks the every 3 days for 4 weeks ect. I’m not saying you should do this, just saying it’s what I did. I was symptom free for months before I did this.
I also take:
I also eat 24 hr fermented yogurt every day
written by Cindy U
submitted in the colitis venting area
My name is Cindy. I am 56 years old and have been diagnosed with UC for a year and a half. Currently I am symptom free, have one bowel movement per day that is a Bristol 4 or 5.
Great post Cindy!
Continued health and healing. Great add to the site! :-)
Best, Shelly
Thank you Shelly and thank you to everyone in this ihaveuc community who have been such an invaluable source of support-especially you Adam.
Awesome Cindy- health is a beautiful thing!
Allison
It is, Alison. For me it requires some maintenance (SCD) but that’s a small price to pay in my estimation. I really feel much better in general when I stay strict on the diet.
Agreed Cindy. I had to finally stop thinking I was “treating myself” to a bit of chocolate, when in fact I was just “cheating myself” of health… Health is the best & and I’ll drink (a cup of tea) to that!
Hope Indeed! Thanks for the post Cindy. I am on day 10 of the GAPS introduction diet (currently on stage 2) and it’s been a roller coaster. Your post definitely gives me a bit more belief that this WILL work!
I love this line because it’s so true: “My doctor told me that I would be on medication for the rest of my life and it did not matter what I ate. What a load of bull!!!”
This BLOWS MY MIND
Ryan
Good for you! Hang in there because it was a roller coaster for me too. If you can just hang tough and stay the course it will pay off. After I finished Gaps I found the pecanbread stages from that website very helpful. They seem to know how to choose foods that are easiest to digest. I’m still totally symptom free and at one time I thought this would never happen. It’s not always easy to stay faithful to the program but you can do it and it will bring great rewards. Best of luck.
Cindy
My colities flares are now skin flares ,very itchie with small boil like outbreaks using pred to stop flare.and will start ldn when I taper to 5mg. Has anybody started having skin problems with or after there colities flare??
My 17 year old daughter has been using LDN for over a year now and it has been a life saver! If you are at all open minded there is so much info on LDN online. One of best websites is LDN Research Trust. I was very skeptical about LDN at first and researched it for a couple months before deciding to give to my daughter. Within 24 hours she was feeling better. There are some books at Amazon about LDN we found helpful. LDN is super cheap ($30 per month). Remember, LDN is an FDA approved drug! If you have any questions feel free to email me at Diamonism@aol.com
We live in Chicago and work with a wonderful Integrative Doctor, Silvia Panitch who prescibes the LDN and the folks at Mark Drugs are great too (ask for Craig or the owner Mark). Good luck to all!
Larry
So glad to hear about the great results your daughter has had with LDN. I feel that so many could benefit from this little known drug. They (my doc) tells me that it doesn’t work for everyone-I would like, therefore to ask you a couple of questions in the interest of understanding why this is the case.
-does your daughter adhere to any dietary restrictions such as SCD or any other?
-did she take stearoids after being diagnosed?
-does she get much exercise?
-does she take other medications or supplements?
My experience with this drug has been as life changing for me as it was for your daughter. This disease can be so difficult and my wish is that everyone could have the result that we both had. I ask these questions in an attempt to ferret out information that could be helpful to others. Clinical trials are so terribly expensive and with the lack of patent, there are simply no incentives to explore the usefulness of this drug. This wonderful conduit for information that Adam has provided could be the source of a spreading curiosity that might just bring enough attention to LDN to spawn further investigation by someone who could benefit from it or give it the platform it deserves. Congratulations to your daughter and also to you for thinking outside the box.
Cindy